26 – 28 APRIL 2006
Hotel Vijay Park, Chennai
The Collaborative Fund for HIV Treatment
This workshop included participants from 4 countries: Nepal, Bangladesh,
Pakistan and India. The Collaborative Fund for HIV Treatment Preparedness,
South Asia organized the workshop. As the local host, the Indian Network of
People living with HIV/AIDS (INP+) organized logistics and administration.
During the three day workshop, the current scenario of Access to Treatment in
each country was not only explored, but also the participants were educated on
various issues related to treatments access, for example an update on ARVs and
HIV Co-Infection. The workshop was designed to cover all-important needs of the
grantees including treatment literacy, monitoring and evaluation, and human
rights, stigma and discrimination as related to treatments access.
The workshop was participatory in nature, with the participants mainly working in
country groups to explore the issues. Plenary feedback sessions allowed time for
further discussions of points raised and sharing of ideas amongst country
representatives. Ultimately, the country participants each worked to review their
existing project activities and to set plans for its improvement. They also
developed indicators needed to ensure that their project activities would be fully
Evaluation of the workshop by participants was positive, and the progress in the
grantees’ respective projects over the next few months will indicate the impact of
This report was written by Anjana Lakshmi P, Secretariat Support Officer, INP+.
Mr. Sudha Prabhu and Mr. Alagarsamy of INP+ provided administrative and
technical support for organizing the workshop
All enquiries about the Collaborative Fund in South Asia should go to the
Regional Coordinator, South Asia, Mr. Loon Gangte at email@example.com
Session 1: Expectations
Session 2: Introduction to Collaborative Fund and TIDES
Session 3: Country reports on Access to Treatment
Session 4: Project presentation from Grantees
Session 5: ARV. OI & Co-infection Update
Session 6: Treatment Literacy – Panel Discussion
Session 7: Developing Strategic Treatment Advocacy Plan
Session 8: Human Rights & Stigma and discrimination
Session 9: Marginalized Groups and Treatments Access –
Panel Discussion 18
Session 10: Monitoring and Evaluation
Session 11: Review and evaluation of the workshop
Appendix 1: List of Participants
Appendix 2: Workshop Agenda
Appendix 3: Summary of Participant evaluations
The workshop aims to provide technical assistance to the grantees of the
collaborative fund and educate them on Monitoring and Evaluation.
The workshop focused on developing the capacity of grantees and the RAC in
areas identified by them in the Pre-workshop TA survey.
At the end of this workshop, participants should be able to:
Update themselves in treatment advocacy and literacy in order to create
more demand within the region for AIDS treatments.
Identify barriers in treatment access in the region and find ways to bridge
Background to this workshop
Millions of people around the world need HIV treatment now and millions more
will need it in the future. Successful advocacy efforts, led by people living with
HIV/AIDS, have resulted in new political and funding commitments by
multilateral, bilateral and national government agencies, fortifying the hope that
HIV treatment will be accessible in al parts of the world.
The effectiveness of HIV treatment access efforts will depend on the ability of
people living with HIV to overcome the stigma associated with HIV disease,
access to medicines, and health care services in their communities and
understand how to make and follow through on treatment decisions.
The collaborative fund is developed in partnership with the membership of the
International Treatment Preparedness Coalition (ITPC) and Tides Foundation
and has leading Treatment advocates and educators from around the world. It is
a community – driven funding mechanism to support HIV treatment advocacy
and education efforts in eight funding regions: Southern Africa, West Africa, East
Africa, Southeast Asia, South Asia, Caribbean, Lain America, and Eastern
Europe/Central Asia. In each funding region, the collaborative fund provides
Grants for community based organizations for HIV treatment advocacy
and education projects
Support for regional networks to share information, implement
collaborative strategies, and provide technical assistance to grantees
As a part of the funding program the workshop on “Technical Assistance and
M & E” had been arranged for the South Asia region grantees.
Outline of the workshop
The workshop included sessions on
o ARV & Co-infection Update
o Human Rights & Stigma and Discrimination
o Monitoring and Evaluation
The participants who attended the workshop will be equipped with the skills
necessary to develop, share the knowledge on treatment literacy, advocacy skills
and implement the project activities in a more perfection manner.
Panel Discussion & Activities
The panel discussion and the activities carried out during the workshop
encouraged the participants to update themselves with the scenario of treatment
access in other countries.
The countries of Nepal, Bangladesh, Pakistan and India were invited to
participate in this workshop.
In each country, the grantees were requested to nominate one person from their
organization. All Regional Advisory Committee (RAC) members of South Asia
attended the meeting. If a RAC member was involved with a grantee project,
then another representative of the organisation was also invited to the meeting.
Representatives from Tides Foundation, administrative support from INP+, the
regional coordinator for South Asia, and technical advisors also attended.
A full list of participants is included in appendix one.
Unfortunately, two participants from Pakistan were unable to attend due to visa
The Collaborative Fund for HIV Treatment Preparedness, South Asia organized
the workshop. Indian Network for People living with HIV/AIDS (INP+) was the
The opening of the workshop began with Mr. Loon’s welcome address. All the
participants including Mr. David Barr, Global Manager – Collaborative Fund for
HIV Treatment Preparedness and Mr. Andy Quan, Project Manager - Asia
attended the opening session.
In the opening, Mr. Loon explained the workshop to participants. It was followed
by the review of the agenda where Mr. Loon informed the participants about the
minor changes that had been made to the agenda shared with them. He also
updated them with logistics, housekeeping arrangements for the workshop venue
and travel reimbursement procedures.
Session – 1 EXPECTATIONS
Mr. Andy Quan, Technical Advisor – Asia made this session an activity based
one that turned out livelier as the participants were asked to list their
expectations on three different topics – What to learn, What to do and What to
take home from this workshop. The participants were given about five minutes to
jot down their points and at the end of the session he informed them that the
common interest of theirs will be accomplished in the workshop as the agenda
had been designed accordingly. Listed below are the common points of
expectations from the participants.
Learn more about treatment literacy in other countries
Know about the status of access to treatment in other countries
Know more about ARV, OI & co-infection
Know what is advocacy
To learn about Monitoring and Evaluation
Session – 2 INTRODUCTIONS TO
COLLABORATIVE FUND AND TIDES
Mr. David Barr, Global Manager – Collaborative fund for HIV Treatment
Preparedness informed the participants about the Collaborative Fund, TIDES
Foundation, and the International Treatment Preparedness Coalition through a
His presentation provided a clear vision that Collaborative Fund is a partnership
of Tides Foundation and the International Treatment Preparedness Coalition and
a community driven funding mechanism that provides small grants to community
organizations for treatment education, mobilization and advocacy project with
technical assistance for the support grantees. The participants came to know
about the 10 funding regions of Collaborative fund and the mechanism in which it
works. They were also able to know about the breakup of the fund amount
through the following demonstration
TOTAL SPENDING - Breakdown by Activity
Networks 7% Community Networks
Direct Admin 13%
Reg. Coordination CRP Coordination
Indirect Admin 9%
Other 0% Grants 43%
The members were also informed about the grant application process, grant
analysis, Process of Technical Assistance and network support given to each
funding region, and the Process of Monitoring and Evaluation. The role of the
Tides Foundation in the Collaborative Fund was explained to the participants by
listing out the activities done by them that includes – administering grants,
ensuring accountability and transparency of process, assists in developing
policies of equity, diversity and openness, raising funds, assist community review
panels in their work and reporting to donors. Mr. David concluded the session by
sharing the plans of Collaborative Fund for 2006.
Session – 3 COUNTRY REPORTS ON ACCESS TO
Mr. Greg Manning from Australian International Health Institute chaired the
session. He formally invited and introduced the panel members to the
participants. The panel included Mr. Rajiv Kafle from Nepal, Mr. Ratan Singh
from India, Mr. Nazir Masih from Pakistan and Mr. Shale Ahmed from
Bangladesh. The panel members were asked to present their country reports on
Access to Treatment covering the details of number of PLHAs in their country,
estimated number to be in need of ARV, estimated number who has access to
ARV treatment, availability of ARV and the methods followed in its distribution,
and also the details about the available drugs. Listed below are the details
shared by the panel members for the above stated questions.
NUMBER OF PLHAs IN THE COUNTRY
Nepal: The government report states that 60,000 people in Nepal are positive
where as the actual estimation are around 120000 to 180000.
Bangladesh: As per the Ministry of Health of Bangladesh, the total reported
case is 658 and total estimated case is 7600. As a contrast the source from
WHO & UNAIDS states the total estimated case could be around 13000 – 21000.
India: The total estimated number of PLHAs is 5.206 million till 2005.
Pakistan: The total number of PLHAs is 2829 that includes 2512 as HIV infection
and 317 as AIDS patients.
ESTIMATED NUMBER OF PLHAs TO BE IN NEED OF ARV
Bangladesh: As per Government estimation, there are 67 members who are in
need of ARV
India: The number of PLHAs who are eligible to put on ART in India as on 31st
May 2005 is 500000
Pakistan: No registered ARV till November 2005
ESTIMATED NUMBER WHO HAVE ACCESS TO ARV TREATMENT
Nepal: There are totally 500 people on ARV out of which 400 people are enrolled
at the Govt. ARV Roll out Centres
Bangladesh: 38 individuals through Ashar Alo and 15 individuals through Mukto
Akash are being provided ARV
India: A total of 26231 are under NACO supported ART centre and 766 are
under State supported ART centre
Pakistan: A total of 109 members are under ART
IS ARV AVAILABLE? HOW ARE THEY DISTRIBUTED? WHAT DRUGS
ARE AVAILABLE OR UNAVAILABLE
Nepal: Around 10 – 12% of the members are taking the 2nd line regimen drugs.
There are seven ARV Roll out Centres out of which the main one is at Katmandu.
The readily available drugs are from CIPLA which costs 1000 INR for 1st line
Regimen and the Effavirenz tablet costs Rs.4500/-
Bangladesh: Currently 3 medicines are available. In which, the available two
drugs combination medicines are Lamivudine, Zidovudine and the three drugs
combination medicines are Lamivudine, Zidovudine & Nevirapine. The single
available drug is Effavirenz
India: ARV medicines are being provided through 25 centres through out the
nation. The available first line regimens are Zidovudine, Stavudine, Lamivudine,
Nevirapine and Effavirenz. The second line regimen and the pediatric doses are
Pakistan: The General Medicines for OIs are available at PIMS Islamabad. Also
50 persons are getting ARV in a year through Shaukat Khanum sponsored by
After the presentation of the panel on the country report on Access to Treatment,
Mr. Greg thanked panel members. He concluded the session by presenting his
observations on the panel discussion that are listed below
Number of PLHAs on ART is low
Huge difference between government and WHO estimates. Is this a useful
Quality of rollout is problematic.
Disruption in the adherence of ART
Non availability of 2nd line regimens and pediatric doses
Sources of drugs is of interest to the group
Hep C and IDU use is an issue/HCV
Costs of tests and drugs are high: needs advocacy
Session – 4 PROJECT PRESENTATIONS FROM
Mr. Andy Quan chaired and invited the representatives from each country to the
dais. LEPRA and Kripa Foundation from India, NAP+N from Nepal, NCCR/CRY
from Pakistan and AAS from Bangladesh made the project presentations.
LEPRA: Dr. Sai Krishna representing Cheyutha presented the project activities.
The hallmark of their project is the involvement and leadership of PLWHA. It has
promoted the leadership quality of positive persons in fighting the epidemic and
provides them with psychosocial and clinical services. The project has developed
a group of volunteers to impart treatment education and literacy among PLWHA,
referred to as positive speakers. The presentation also included the vital task
accomplished based on the lessons learned – Networking at the service
providing centres, self disclosure as a strategy in rapport development, active
follow-up at the service delivery, departmental coordination of PLHAs health care
centres, PLHAs involvement in child management during medication days,
regular follow-up through Cheyutha clinic and nutritional support for sustained
KRIPA FOUNDATION: Mr. Shreenivas made the project presentation that gave
a picture on the implementation of the project activities, that included the site
selection for the project, the reason for selecting the site, organization of in-
house training, Primary care givers and Peer Educators training, which resulted
in collaboration with the pharmaceutical companies. In conclusion, he presented
observations and suggestions from the project: that the role of PCGs / PVs
should be structured, necessity for medical camps, need for monetary
reimbursement, affirmations to the PVs work, and enhanced training
programmes for PCGs.
NAP+N: Mr. Anjan stated that the objective of their organization is Treatment
Advocacy. Many IEC materials related to ARV have been prepared educating
people on the importance of taking ARV on time in their local language – Nepali.
Other materials like leaflets and posters on 1st and 2nd line regimens have also
been prepared. The presentation also included the details about the treatment
advocacy program organized for People living with HIV/AIDS and stated that the
outcome of the program indicated a lack of knowledge among PLHAs about
ARV/ Treatment/ Side effects and their management.
NCCR/ CRY: Mr. Qaisar Ismail made the presentation of their project. It began
with the current problems faced in their country by PLHAs and the activities that
have been carried out in addressing these problems including advocacy with
Provincial Government, awareness raising seminars for policy makers,
awareness raising programs for leadership of Health care workers, seminars for
Community activists and Civil Society Organizations and media, meeting with
pharmaceutical companies, meetings with Media persons and developing &
printing IEC material. He concluded his presentation with lesson learned –
lobbying and developing personal contacts with decision makers will bring
change, advocacy and lobbying have become a regular processes, the need of
designing activities to make the situation better, and changing the attitude of
journalists and media representatives who look out for hot news and fail to show
any interest on issues of people living with HIV/AIDS.
AAS: Ms. Habiba Akter made the project presentation explaining activities that
were implemented including a seminar on Advocacy, Treatment, and Care for
support for PLHAs. The presentation also included the components of Treatment
access for PLHAs in Bangladesh, and their project’s contribution to better
treatment access to PLHA. She also presented the achievements during the
project period, which included the realization of the necessity of treatment for
PLHAs among the health service providers, elites and stakeholders, and
motivation given to health service providers to provide treatment without showing
discrimination towards PLHAs. The challenges and obstacles faced in the
process of implementation of the project activities were also presented which
included sensitization of health service providers; expanding areas of program
coverage, inadequate manpower to implement the project activities, and
unaffordable medicines for the PLHAs.
Session – 5 ARV, OI & CO-INFECTION UPDATE
Dr. Tokugha Yepthomi, clinician and researcher of YRG CARE, Chennai made a
presentation on the update on Highly Active Antiretroviral Therapy (HAART) in
HIV management. His presentation included the HIV scenario in India stating
5.137 million infections, with a continuous growth in the number of AIDS cases,
in which more than 85% infections are in the age group of 15-49 years out of
which 75% are men. His presentation also highlighted the fact that the
management of HIV disease can be done through management and prevention
of opportunistic infections, and psychosocial support along with antiretroviral
The presentation covered basic information about the life cycle of the human
immunodeficiency virus. Dr. Toku also explained to the participants about the
currently available generic antiretroviral drugs in India. The participants were
educated about ART, when to start it, and the baseline investigations that needs
to be done prior taking ART. They were also informed about the side effects of
Dr. Toku informed the participants about the HAART associated physical
changes that include increased abdominal growth, enlargement of dorsocervical
fat pads, breast enlargement, lipoatrophy in face, arms, legs and buttocks and
prominent leg veins. He also insisted on the fact that the success of HAART
depends only when the therapy is started with the patient’s consent, where the
patient should be explained about the importance of adherence before starting &
at every visit thereafter and when the viral load is suppressed.
The benefits of HAART including suppression of HIV, prevention of immune
system damage, and increase in survival times. If sustainable, HIV becomes a
manageable disease and decreases Opportunistic Infections (OI). These issues
were also explained to the participants.
He concluded the session presenting the goal of the therapy as maximum and
durable suppression of viral load, restoration and/or preservation of immunologic
function, improvement of quality of life, and reduction of HIV-related morbidity
Session – 6 TREATMENT LITERACY
Mr. Rajiv Kafle of Nepal chaired the session and invited the panel members to
the dais. The panel members were Ms. Shukria Gul from Pakistan, Mr.
Anisuzzaman from Bangladesh, Mr. Mike Tonsing from India and Mr. Anjan
Amatya from Nepal.
Mr. Rajiv opened the panel discussion presenting to the participants on treatment
advocacy and literacy efforts taken by his organization. He stated that Treatment
Literacy is an essential element for Treatment advocacy and expressed his
grievance about the lack of awareness among community members about the
importance of treatment literacy. He insisted that an individual affected should
know about the medicines that are prescribed – at least about their basics. He
proudly shared that the Nepal team focuses on Treatment Literacy and had
developed Posters about ARV and treatment adherence adopting the contents
from the website and reproduced in their vernacular language. He also informed
the participants about the four books that they had published highlighting the
importance of Treatment literacy and on treatment training for advocates.
The panel members were asked to present about treatment literacy by framing
answers to a set of questions like definition of treatment literacy, its importance,
the need for treatment literacy materials, what could make good treatment
literacy materials, needs in each country and how treatment literacy materials
can be produced and distributed.
Pakistan: Ms. Shukria Gul presented the scenario of treatment literacy in their
country. According to them, treatment literacy is giving complete information
regarding HIV Treatment, when and why to start and also about HIV. She stated
about the lack of awareness about treatment literacy in spite of its importance.
They are ignorant not only about the available treatment but also about the
NGOs that provide such services. Moreover, the available treatment literacy
materials are not in their local languages. The pathetic information shared was
even the doctors’ do not show any interest in sharing the information to the
community members. The available sources of treatment literacy are purely
individual efforts where the materials are taken from other sources. She
concluded her presentation, by highlighting the requirement of treatment literacy
materials in their local language is the ardent need of the community there.
Bangladesh: Mr. Anisuzzaman represented their country and presented the
country scenario of treatment literacy. According to their team, treatment literacy
should be a worthy IEC material that gives information about ARV, why and
when it is needed along with its side effects. He stated that there is an immediate
need for treatment literacy materials as the Government activities emphasize
Prevention. He stated that these materials should be able to provide knowledge
about ARV, OI and its side effects and could be produced in any form like audio
visual, brochures and posters.
Delhi: Mr. Mike Tonsing stated that treatment literacy should be a user-friendly
IEC material highlighting the importance of Treatment and its benefits. Many of
the community members do not speak about ARV, as they could not afford it.
Moreover, the lack of education prevents the members in browsing or getting
access through websites. The prime concern is that treatment literacy materials
are not readily available in the local languages. Also the doctors do not feel the
importance of sharing the treatment information to PLHAs. He concluded his talk
by sharing their future plan to produce Treatment literacy in the local language
for the next quarter.
Nepal: Mr. Anjan Amatya stated that Treatment Literacy is IEC materials with
proper information about the subject, which could be in any form like booklet,
posters etc. It is important as it will be useful for layman to update their
knowledge. According to their team, any form of materials that provides details
on OI, ARV, side effects are good treatment literacy materials. He concluded
stating that the literacy materials should be simple reaching the grass root level.
Mr. Rajiv concluded the panel discussion sharing observations based on the
inputs given by the panel members. He stated that treatment literacy is the ability
to act upon the existing barriers and through this community members should
also know how to demand things for their welfare. Adding to which, Mr. Greg
stated that part of treatment literacy should also involve treatment of TB as well.
Mr. David stated that the role of IEC materials plays a vital role, like counseling or
workshops do, in imparting knowledge about treatment.
Session – 7 DEVELOPING STRATEGIC
TREATMENT ADVOCACY PLAN
Ms. Leena of MSF opened the session by giving the definition of Advocacy as “A
campaign that an individual or organization undertakes to increase awareness for
a particular issue, engaging in efforts to change attitudes and behaviour and a
tool to disseminate information intended to influence public policy and law”. She
made a clear statement that identifying advocacy issues in treatment should not
stop with finding access to affordable drugs rather it should include Access to
basic health care, public healthcare infrastructure, discriminatory behavior on the
part of health care personnel, concerns about confidentiality, gender barriers,
and understanding the legal basis of the right to health in the country.
The entire session of Ms. Leena revolved around the key points that are as
Apparent vision about what the actual need is and what we have to
Obvious about the target group and our expectations from them (backup
documentation of cases happened)
How to achieve it – through people contact, constant touch with the
ministries, updating them by writing them about the issues related to the
subject and the important decisions taken
Documentation of the cases will be one of the effective tools
Focusing on One important issue at one platform should be the prime
She also explained to the participants about the backup details that should be
kept ready for any advocacy efforts that are being undertaken which include:
Details about cases of discrimination
Cases where PLHAs need information/ assistance to access treatment
Proposed Government policies & legal amendments that should be
understood and critiqued vis-à-vis impact (need to get updated on all the
new policies that come up related to the issues).
In the activity, the members were asked to divide themselves into two groups to
work on two different case studies.
CASE – 1: PAKISTAN AND NEPAL
An HIV/AIDS bill was drafted by the community and was sent to Parliament
where there are a few fundamentalist parliamentarians who decide to amend the
law. The community has to decide how to stop the amendment.
Mr. Asher presented the group work
He stated that in order to bring the expected changes the first step to accomplish
would be to form a coalition and consensus among the PLHAs, followed by
forming another coalition of different stakeholders and also to identify like minded
allies in Parliament, human rights organizations, and the Media.
After forming the required manpower, the following strategies can be followed to
implement the plan
- Letter campaign – PM/ Speaker
- Advocacy meeting, briefing
- Press Conference/ Press release
- Protest/ Agitation/ Strike
- Phone / Fax campaign
- Live story/ media Reporting
SUGGESTIONS FROM MS. LEENA: Before forming any coalition a supportive
background document needs to be kept ready. Many briefings need to be made
before getting the support from a few parliamentarians. She suggested that the
Health movement needs to be one of the strategies chosen and there should
always be a constant involvement of health movement in all the advocacy
activities. Mr. Andy suggested the community needs to choose the right person
in the parliament to carry out the message on behalf of the community.
CASE -2: GSK has applied for a patent and the community has to find a solution
to stop this patent. (India and Bangladesh)
Dr. Sai Krishna presented the group work
They have presented a broader plan of strategies to follow so as to achieve the
The following are the strategies suggested
- Consultants for understanding patent law
- Dissemination of this information to different levels of stakeholders
- Formation of pressure group comprising doctors, PLWHA, Economists,
Media, law-personnel, people’s representatives and the pharmaceutical
- Influencing Policy Makers
One to one interaction
- Demonstration & representation in legal institutions
- Identification of key persons or organizations among the community
- Information gathering related to the issue
- Dissemination of these information at different levels / stake holders who
could support for the community, present to the judiciary etc
- Drafting the Action-plan - whom to contact, what to share and how to
SUGGESTION FROM MS. LEENA: The communication should be given more
importance. At the same time, the methodology of using a multilateral approach
also needs to be given equal importance. Mr. Ratan suggested while looking into
the strategy plan, the required funds to implement the above-mentioned strategy
needs to be given equal importance.
Ms. Leena concluded the session by highlighting important tasks that need to be
done as groundwork for any kind of advocacy activities.
- Calling - Communication to all stake holders
- Organizing meeting
- Writing Background documents
- Printing Banner
- Arrange the travel
- Police permission
- Legal Aid lawyers
- Media calls – the groundwork done to prepare media to correctly represent
and disseminate community demands.
Session – 8 HUMAN RIGHTS & STIGMA AND
Mr. RajKumar of Lawyers Collective presented to the members on Human Rights
issues related to Treatment Access and how do stigma and discrimination affect
He began his session by giving an introduction to Human Rights. The
participants were informed about the history of the concept of Human rights that
had originated in the Post World War II era and gradually expanded in sphere
and scope. He also shared with them guideline 5 of the International guidelines
on HIV/AIDS and Human Rights that says “States should enact or strengthen anti
discrimination and other protective laws that protect vulnerable groups, people
living with HIV/AIDS and people with disabilities from discrimination in both the
public and private sectors…”
The participants were also informed about the history of the beginning of the
legal response to the pandemic. He stated that the human rights are achieved
through Statutes, Case Law, Policy Directives and other executive action.
Quoting the words of Justice Michael Kirby, High Court of Australia
“Paradoxically enough, the only way in which we will deal effectively with the
rapid spread of HIV/AIDS is by respecting and protecting the rights of those
already exposed to it and those most at risk”, he stated the rights in the context
of HIV/AIDS includes Marriage and Divorce, Maintenance, Right to residence,
Inheritance, Matrimonial Property, and Access to treatment.
Mr. RajKumar shared the story of Mr. Dominic D‘Souza of Goa, a football player
who donated blood. Once donating blood, he found himself HIV infected and was
immediately arrested and isolated. The only concern shown to him was a doctor
visited him daily asking about his health. Then the participants were asked to list
out the violations observed in his story.
Many of the participants were of the same opinion that the reason for the arrest is
not clear and he has not been properly medicated.
He also stated the reason behind sharing the story that it was the first case taken
by the Lawyers Collective Unit.
Following this, two diametrically opposed legal responses to HIV/AIDS were
1. ISOLATIONIST APPROACH: (No solution for the problem)
- Mandatory testing
- Confidentiality breached
- Discrimination against PLHA
2. INTEGRATIONIST APPROACH - (Effective prevention)
- Voluntary testing
- Confidentiality maintained
- Non discrimination towards PLHA
He listed out the problems in the isolationist response as follows
- Requires compulsory repeat testing of HIV negative persons
- Economically not feasible
- Impossible to implement for the whole of a country’s population
He explained to the participants about Access to Treatment, Government’s ART
roll out plan, Issues for consideration. Following to which, the participants were
presented laws that promote Vulnerability, and about reproductive rights. He
concluded his session by quoting NACO policy on reproductive rights which says
HIV + women should have a complete choice in making decisions about
pregnancy and childbirth, there should be no forced abortion or even sterilization
on the grounds of HIV status and proper counseling should be offered to enable
pregnant women to make an appropriate decision either to continue with or
terminate the pregnancy.
Session – 9 MARGINALIZED GROUPS AND
TREATMENT ACCESS (Panel Discussion)
The panel discussion on Marginalized groups and treatment access included the
following members – Mr. Ratan representing IDUs, Ms. Habiba representing
Women, Mr. Shale representing MSM and Ms. Jeeva representing Transgender.
Mr. David Barr chaired the panel discussion.
He opened up the session highlighting the importance of having discussions on
the Marginalized groups and Treatment access. He also stated that it would be
more interesting if the community representatives share what is working for them
and what is not.
Mr. Ratan representing the IDU community listed out the issues faced by their
community that included co-infection of HCV & HIV, no rehabilitation centres in
the Government sector, lack of implementation of policy on drugs abuse
treatment, oral substitution and displacement of IDUs. He also expressed his
grievance that many of the members of MNP+ use drugs and the local
community, family and other NGOs & networks working on HIV & drugs,
He shared with the group an important issue of “Adherence – IDUs & ART” and
insisted on the need for oral substitution therapy (OST) and stated that in spite of
being in the national policy, it has not been implemented. Following this, he
highlighted the issue of HCV – Hepatitis C co-infection and the lack of treatment
for it, which is not even in the policy at all.
After his presentation, Ms. Leena of MSF came up with a suggestion that there
needs to be clear idea on the available drugs for the co-infection of HIV &
Hepatitis C. For which, Mr. Ratan answered that no surveys had been taken so
far to find out the exact number of IDUs receiving ART. He expressed his
grievance about the lack of rehabilitation program for IDUs and informed that the
efficacy of ART had been affected. He stated there had always been an
unanswered question about the acceptance of the IDUs after going through the
rehabilitation centres. He concluded his session by stating that no component
currently focuses on the livelihood of the rehabilitate cases.
Following him, Ms. Habiba Akter represented women as a marginalized group
and stated that less attention had been paid to this community and also the
community had to face problem not only from the family but also from the society
after the demise of the life partner. She insisted that lack of education and
cultural norms were the biggest barriers to reaching and involving marginalized
groups. She also came out with a few suggestions like developing the skills of
these group members in Public Speaking, building a Supportive environment,
experience sharing, access to information, assisting them to build a relationship
with legal support organizations. All of these would facilitate leadership roles for
those marginalized populations.
Adding to her concerns, Mr. David requested that Regional Advisory Committee
(RAC) members discuss gender balance, staffing in the program, and the
process to address gender balance in this meeting.
Mr. Shale presented the participants with the barriers faced by the MSM
community. He identified socio-cultural norms as the foremost barrier for their
group. He quoted an instance about the challenge faced by their society of an
allegation made by “Frontline” against them stating that their society spreads
homosexuality. Another barrier faced by their group was the motivation of the
public by the religious factor. He stated that forming Self-help group could be a
source to overcome this barrier. Also developing income generating activities and
building linkage with legal support organizations could also help to overcome
these barriers. He informed the participants that no survey has been conducted
by the government to find out the exact figure of the number of MSMs on ART.
He concluded his session by expressing his grievance that their group stays far
behind for treatment access.
As the last panel member, representing her Transgender group, Ms. Jeeva made
a presentation on their organization and its activities. It presented the
organization’s inception year and the various activities carried out by them
supporting the group till date. The presentation clearly stated the strategies that
had been followed in developing their membership included support group
meeting, children motivational classes, educational support, nutritional and legal
support. It also highlighted some real facts that were associated with the
community that included being physically unique, social discrimination,
commercial sex, begging etc. She concluded her session by presenting their
future plans comprising of Training on Human Rights, Demand for welfare
schemes, Training on alternative sources, Housing for the Target groups,
Formulating action plan against discrimination in the society & media, Sensitizing
the public on transgender issues, Formation of more number of self help groups,
Legal support, and Rehabilitation for all Transgender.
Session – 10 MONITORING AND EVALUATION
Dr. Sudhakar, MBBS, MHA took the session on Monitoring and Evaluation. The
purpose of the session was to educate the participants on the subject, the
difference between them, its benefits and how to develop effective indicators.
The participants were informed about the proceedings of the session and also
explained about the activity that would be a part of it.
The session began with the definition of Monitoring – “Performance and analysis
of routine measurement aimed at defining changes in environment or health
status of population” or “ Continuous oversight of activities so that they are
proceeding accessing to the plan. It keeps track of achievements, staff
movements and utilization, supplies of equipments and money spent in relation
to the resources available”. In short, it means the performance and analysis of
the work undertaken.
To explain it more specifically, he gave an instance of Comptroller & Auditor
General (CAG) report of 2002–03 about the malfunctioning of condom vending
machines bought in bulk in Punjab where NACO had directed the problem to
Directorate of Health Services (DHS) to do the monitoring of the machines
purchased and found that out of 385 condom vending machines purchased 230
machines were non functional.
He also gave the definition of Evaluation – “Use of social research methods to
systematically investigate programs effectiveness” that generally includes study
design, Control/ comparison group, Measurement over time and specific studies”.
In short, any program to be evaluated should contain the components of
Outcome and Impact. He explained it with an example – To evaluate the condom
vending machine project, the components that need to be identified were – the
perfect usage of condom i.e. the outcome of the project and percentage of
change in the behaviour, which would be the impact of the project.
In crux, the comprehensive M & E framework should include Needs assessment,
Monitoring comprising the aspects of Input – Process – Output, Evaluation
comprising Outcome and Impact and Cost Effectiveness. Adding to which, they
were instructed that the Cost effectiveness actually means the amount spent vs.
the objective achieved or the result / output.
The process of evaluation should always contain a goal, objectives that should
be specific, measurable, attainable, and realistic with time frame (SMART). To
attain the objectives, the activities / strategies need to be designed based on
which indicator needs to be developed. Generally a good indicator should be
operationalised, reliable, valid, specific and sensitive. Similarly the methods and
tools should be developed for the implementation of the evaluation process.
The participants were asked to sit in groups (by country) and develop the
indicators for their respective projects within half an hour.
Ms. Snehalatha representing INP+ presented the indicators developed of their
project titled “Community mobilization and Capacity building of PLHA networks in
India on Treatment Preparedness”. She presented the indicators at national and
ACTIVITY 1: National Advocacy meeting (OPERATIONAL)
• Availability of national action plan on Treatment education / advocacy –
• Implementation of recommendations made at the national advocacy
meeting in NACO treatment program
ACTIVITY 2: National ToT
• Availability of facilitator, modules on Treatment/ advocacy
• No of PLHA trained as masters trainers
ACTIVITY 3: Preparation of IEC materials on Treatment Education/ Advocacy
• No of IEC treatment education materials produced and distributed by type
ACTIVITY 1: Rapid Situation Assessment
Availability of situation and response analysis reports on Treatment
education/ advocacy by state level PLHA networks.
ACTIVITY 2: Treatment education Program
No of PLHA trained on Treatment education – by gender, marginalized
ACTIVITY 3: Treatment Advocacy Program
No of PLHA trained on Treatment advocacy – by gender, marginalized
No of sessions conducted
ACTIVITY 4: Advocacy Activities
No of people reached through the advocacy activities by the type of
Mr. Shahid-Al-Mamun presented the indicators developed for their project titled
“Promoting MSM/ MSW to voluntary testing and counseling.
ACTIVITY 1: Provide Training for Peer Educators to educate & empower the
community for VCT
• No of Peer Educators received training
• No. of training organized
ACTIVITY 2: Provide training for counselors in HIV & Psychosexual Pre and
posttest counseling - Basic and Follow-up
• No of counselor received training
• No of clients received counseling service
ACTIVITY 3: Ensure facilities are available for sympathetic & confidential testing
• Clinic service currently ongoing with appropriate equipment
• No of clients refer for testing and counseling
ACTIVITY 4: Develop IEC materials for use by Peer Educators and Counselors
• No of IEC materials developed
ACTIVITY 5: Organizing social group meeting
• No of social group meeting held
• No of participants attended the session
Mr. Pervaiz Masih of Cathe Foundation presented the indicator developed for
their project on “Magazine as a tool for Advocacy for PLWHA in Pakistan”
He presented the members with the interventions of the project that includes
Publishing 12 magazines containing enough material (total 2000 copies) on HIV
& AIDS in one year, 12 monthly meetings of Editorial board and steering
committee to collect and finalize material on HIV & AIDS to be published, involve
media and influential people for advocacy of PLWHA rights, mid-term and final
assessment with the following indicators.
Number of AIDS CARE magazines published in one year
Number of AIDS CARE copies published and distributed to people
Regular meetings of editorial board/steering committee, collecting,
selecting and finalizing material to be published in the first week of every
Established networking with other medias (sharing information and
publishing material on HIV & AIDS)
Boosted up advocacy issues through publication of special articles,
features and Interviews of PLWHA
Mid-term and final assessment of AIDS CARE done after six months and
at the completion of the project cycle
Feedback from readers to improve quality of material and publication
Mr. Anjan Amatya representing NAP+N presented the indicators developed for
the project titled “Treatment Education for People living with HIV in Nepal”
ACTIVITY 1: No of PLHA project staff hired
Project Coordinator – 1
Project Officer – 1
ACTIVITY 2: No of treatment literacy materials developed
4 treatment literacy posters developed
6 treatment literacy fact sheets developed
6 treatment literacy brochures developed
ACTIVITY 3: No of PLHA resource persons/trainers hired
ACTIVITY 4: No of local PLHA resource persons hired
ACTIVITY 5: No of treatment training workshop conducted for PLHA
8 workshops in 8 districts for 2 days
ACTIVITY 6: No of PLHA who receive treatment literacy training
240 persons reached through 8 workshops for 30 persons each
ACTIVITY 7: No of treatment training workshop conducted for CBO/ NGO
8 workshops in 8 districts for 2 days
ACTIVITY 8: No of CBO/NGOs workers who receive treatment literacy training
200 persons reached through 8 workshops for 25 persons each
Session 11 REVIEW AND EVALUATION OF THE
The participants were asked to fill out the evaluation forms provided during the
workshop. There were forms to assess every day’s activities and also there was
a form on over all evaluation of the workshop that included the components of
logistical arrangements made, venue, accommodation arrangements made. The
overall evaluation of the workshop given by the participants is included as
appendix 3 in this report at the end.
Appendix 1: LIST OF PARTICIPANTS
PARTICIPANT NAME ORGANIZATION COUNTRY
1. Md. Shahid Al Mamun BSWS Bangladesh
2. Md. Touhidal Islam AAS “
3. A. K. M. Anisuzzaman Mukto Akash “
4. Mr. Shale Ahmed BSWS “
5. Mr. Nicholas Purification CCDB “
6. Ms. Habiba Akter AAS “
7. Dr. L. Sai Krishna LEPRA India
8. Mr. P V Ramesh NIPASHA+ “
9. Mr. Amarjit Langam GIPA Alliance “
10. Mr. Mike Tonsing DNP+ “
11. Ms. Snehalatha INP+ “
12. Mr. G. S. Shreenivas Kripa Foundation “
13. Mr. Soumitra Poddar SPARSHA “
14. Ms. Jeeva SIP+ “
15. Ms. Noorie Durai SIP+ “
16. Mr. Elango Ramachandar INP+ “
17. Mr. Vijay Nair NIPASHA “
18. Mr. Ratan Singh MNP+ “
19. Dr. Tokugha Yepthomi YRG CARE “
20. Mr. Ujjwal Baral Nava Kiran+ Nepal
21. Mr. Suben Dhakal BDS “
22. Mr. Basanta Chettri NAP+N “
23. Mr. Anjan Amatya NAP+N “
24. Mr. Rajiv Kafle Nava Kiran+ “
25. Mr. Sunil Babu Pant BDS “
26. Mr. Pervaiz Masih Cathe Foundation Pakistan
27. Mr. Ahmed Habib PLUS DF “
28. Mr. Qaisar Ismail NCCR/CRY Pakistan
29. Mr. James Rehmat Pak Plus “
30. Dr. A Momin Kazi BRIDGE “
31. Mr. Asher Qurban Bhatti NLACS “
32. Mr. Nazir Masih NLACS “
33. Ms. Shukria Gul Pak Plus “
1. Mr. David Barr, Global Manager, the Collaborative Fund
2. Mr. Sam Avrett, Observer
3. Mr. Andy Quan, Project Manager, Asia
4. Mr. Loon Gangte, Regional Coordinator
1. Ms. Leena
2. Mr. Raj Kumar
3. Dr. Sudhakar
1. Mr. Alagarsamy INP+
2. Ms. Sudha Prabhu INP+
3. Ms. Anjana Lakshmi P INP+
Appendix 2: WORKSHOP AGENDA
DAY 1 - 26th April 2006
Time Sessions Presenter/ Facilitator
8:45 - 9.15 Opening: Loon
• Welcome and Introductions
• Background and goals of
• Review of agenda
• Logistics and housekeeping
9:15 – 9:45 Expectations Andy Quan
Small group exercise: what do you want Project Manager, Asia.
to accomplish at this workshop?
9.45 - 10.15 Introduction to Collaborative Fund and David Barr,
TIDES Global Manager,
Collaborative Fund for HIV
10:15–10:30 Tea Break
10.30 –12.00 Country Reports on Access to One panelist from each
Treatment; Country (15 minutes each
with 5 minutes of
issues such as: questions)
-How many PLWHA in your country?
-How many people are estimated to be in Chair: Greg Manning
need of ARV?
-How many have access to ARV Panelist
treatment (estimated)? Nepal- Rajiv
-Are ARV available? How are they India-Ratan
distributed? What drugs are available or Pakistan-Nazir
12:00 – 13:00 Project Presentation from Grantees Chair: Andy
(Quick snapshot of the project- 10 mins India- Lepra & Kripa
each highlighting key activities and Nepal- NAP+N
lessons learnt). Pakistan-NCCR/CRY
13:00 – 14.00 Lunch
14:15-15:00 Small Group Discussion – RAC members can
What lessons did you learn from the facilitate small groups.
project presentations? What actions are Report-back.
you inspired to do? (note: the previous
session took up all of the time and no
small group discussions were held)
15:00–16:00 ARV, OI & Co-Infection Update Dr. Toku, TRP India.
-ARV side effects and side effect
-Best 1st & 2nd line combinations
-HIV-TB co-infection / HIV – Hep C co-
16.00-16.15 Tea Break
16.15– 17.15 Treatment Literacy – Panel Discussion Chair: Rajiv
• Each panel member will present on India- from Indian
the following questions: grantees
• What is treatment literacy? Nepal- Anjan from NAPN
• Why is it important? Pakistan-Dr. Bajwa from
• What treatment literacy materials are ASEER
needed? Bangladesh- Mukti from
• What makes good treatment literacy Mukto Akash
• What is needed in each country?
• How will it be produced?
• How will it be distributed?
17:15-17:30 Wrap up / Conclusions / Announcements
DAY 2 - 27th April 2006
Time Sessions Presenter/Facilitator
9.00-9.15 Recap of Day 1. One of the participants,
preferably a grantee.
9.15-10.15 Developing Strategic Treatment Leena, MSF ,
Advocacy Plan Project Manager (India)
• What is advocacy?
• What tools can be used for
• How do we identify issues?
• How do we identify allies?
10.15-10.30 Tea/ Coffee Break
10.30-13.00 Small group sessions: Leena, MSF
• Designing a treatments advocacy Project Manager (India)
• Report back
14.45-16.00 Human Rights & Stigma and RajKumar
Discrimination Lawyer’s Collective
-What Human Rights issues relate to
-How do stigma and discrimination
affect treatments access?
16:00 -16:15 Tea/Coffee Break
16.15-17.15 Marginalized Groups and Treatments Chair: TBA
Access – Panel discussion Women (Kousalya)
What does it mean to be marginalized? IDU (Ratan)
What are the barriers to reaching and MSM (Shale)
involving marginalized groups? Transgender - Noorie
What interventions are required to
strengthen their involvement?
How can we facilitate leadership roles
for those from marginalized
17.15-17.30 Wrap up / Conclusions /
Reception / Party / Drinks / Food/
DAY 3 - 28th April 2006
Time Sessions Presenter/Moderator
9.00-9.15 Report back from day 2
9.15-10.15 M&E Dr. Sudhkar, MBBS,MHA
-What is Monitoring and Evaluation?
-What is the difference between them?
-How do you develop indicators?
-Why is it useful?
10.15-10:30 Tea/Coffee Break
10.30-12.00 Exercise: Dr. Sudhakar, MBBS,MHA
Write 5 indicators for measuring the
success of your current project?
12.00-13.00 Country Meetings – Each grantee Small groups – India and
should be ready to do a short (5 minute) Pakistan
presentation on their project to the other Bangladesh and Nepal
grantees from their country. (note: this could join either groups.
discussion did not take place)
13:00 – 14:00 Lunch
14:00 – 14:15 Energizer
14.15 - 16.00 Action Plan (Individual) Put action plans on wall. If
• Develop a follow-up action plan there is time, one
for after the workshop? organization from each
• What lessons will you bring to country can present.
• What actions will you do to
increase treatments access?
• What are your plans for after
your project finishes, with or
16.00-16.15 Tea/Coffee Break
16.15-16:45 Feedback of workshop - oral
(Suggestion: a small group discussion
on the best thing about the workshop,
and something that could be improved
16:45 – 17:15 Evaluation of workshop – individual
forms – written
17.15-17.30 Final Questions / Closing of Workshop /
Thanks / Good-bye!!!
Appendix 3: SUMMARY OF PARTICIPANTS
A summary of the evaluation of the workshop done by participants will be
distributed at a later date, and included in the final report as appendix 3.